Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting

Abstract

Little has been reported about how to improve health care access and delivery for adolescents and adults with autism spectrum disorder. To understand the contributions to the health disparities in the autism spectrum disorder population, we conducted two independent research approaches to learn about current medical needs. A retrospective chart review was performed to evaluate medical comorbidities and medication use. A focus group was also created to address barriers faced in providing medical care. Of 126 charts reviewed, 49% (n = 62) had intellectual disability, 49% (n = 62) had attention-deficit hyperactivity disorder, 52% (n = 65) had anxiety, 41% (n = 52) had obesity, 31% (n = 39) with a history of aggressive behavior, 31% (n = 31) had depression, 22% (n = 28) had seizures, and 9% (n = 11) had hypertension. A Medical Regimen Complexity Index score was determined to examine medication use trends in the autism spectrum disorder population. Medical Regimen Complexity Index scores were significantly higher for patients with intellectual disability, patients with seizures, and patients with a history of aggressive behavior. Both the focus group and our pre-visit assessment identified the waiting room and waiting time as barriers to care. Understanding the comorbidities, polypharmacy, and medical barriers should provide a better understanding of the current health care access and delivery needs of adolescents and adults with autism spectrum disorder.

Keywords: adolescents; adults; autism spectrum disorders; health services; medical comorbidity.

Figure 1.

Pre-visit phone assessment template.

Figure 2.

Level of stress at different stages of a clinical visit (based on focus group findings).

Figure 3.

Negative feedback loop resulting in difficulties in social interaction. Fear, prior to coming to clinic, is linked to the anticipation of social interaction which can cause some patients to spiral into heightened sensitivities which then make it hard for them to focus on a conversation and successfully interact with others.